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Chronic idiopathic urticaria taking over my life

Posted , 12 users are following.

nancy35849
nancy35849

I found this forum for the first time, yesterday, and so pleased I did. I wrote a big long response to "Martin", if anyone is interested in my recent history with hives. I just wanted to add a little here. Since March, these severe hives have been causing me so much distress and are affecting my life, socially, mentally, recreationally, and in every way! Each day I hope will be the end of them, yet they never go away completely....just fade a little, then return late afternoon. Through to the next morning. Every single day! 3 days a week they're severe, other days, moderate. Therthotrexate is not working yet (on it 2 weeks now). Dr said would take 3 weeks to kick in, though I feel tired and low from the side effects. I decided to help myself on a deeper level while working with the medication and dr. I've begun meditating twice daily, and letting this go, one moment at a time. Today I did not take the steroid since it was low dose and just wanted to wean off it. Hives are no different than on steroids today, so that's good. I am trusting my deeper self to help my body with this, I know I am in the process of healing this right now! I have never imagined hives could be distressing, and at times, debilitating. I wish all of you a quick return to your normal selves. I feel so badly for all of you who are suffering with this awful thing. Peace

1 like, 20 replies

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  • JCH187
    JCH187 nancy35849

    Posted

    My dermatologist is convinced I'm stressed, I said to him last time you try living with this day in day out and not getting stressed. I'm also trying to help myself and have my first session of acupuncture tomorrow, I'm so desperate I'll try anything. I've given up trying to second guess what's causing this, I'm hoping the acupuncture might reset whatever it is that's gone haywire.
    • nancy35849
      nancy35849 JCH187

      Posted

      Lol!!! Yes, this is very stressful, in fact, as I write and for the past 45 minutes, the hives are spreading and getting more itchy. Of course, it's getting to be closer to evening and so this is usual. I do know I have had tremendous stressors in my life this past year, and I know there was something extremely stressful that occurred about 2 weeks prior to my first hives....so maybe stress did cause it. Now it has a life of its own. I wish you all the best with acupuncture and I applaud your courage to deal with this and to be open to letting your mind reset your body's over the top response to "whatever". Good for you, and thank you for responding to my post.
    • JCH187
      JCH187 nancy35849

      Posted

      Yes me too, I went through the stress of losing my job, then the hives started then my beloved cat was PTS, then I was struggling to get another job, then my elderly father fell down the stairs so emotional stress was high. But life is ok again now and they're still here! I'm taking 16 tablets a day just to keep it at bay. Helps to know there are others out there who just know what this is like.
    • nancy35849
      nancy35849 JCH187

      Posted

      Oh no, poor you!  I am sorry to hear about all of those loses you've had to endure!  Life is not easy sometimes.  Interesting though, you had a lot of stressors at once.   I wonder if it's no just stress, but stress overload that might cause our immune system to malfunction....and why against its mast cells in particular?  If it is true, that stress can set it off, than certainly quieting and calming the mind in a big way must also have an effect if we keep at it.  BTW, I've tried Xanax and though it relaxed me, I broke out really badly from it....head to toe ( I've had it in the past and that never happened), same with a glass of wine...now I get hives from it (luckily I'm not into drinking!).  Anyway, I am so glad there are others who understand this horrible thing too.  I'm tired of everyone at work etc. asking me if I've changed detergents, etc. (duh....no....never thought of that after 3 months of this).   Someone even asked if I had bedbugs!!!   That really freaked me out and I tore my bed apart looking for bugs.....there were none. Someone else suggested bird mites!  I don't even have a bird!!  So much for everyone trying to figure this out; it just stresses me out even more!
  • daniela_36294
    daniela_36294 nancy35849

    Posted

    Hi

    I was diagnose with chronic solar urticaria almost 5 years ago. I tried all kind of antihistamine and none worked.

    Finally, my doctor( allergies and inmulogist ) prescribed Xolair.

    I got the first injection in April. One injection of 300 one a month for 4 month.

    I am doing much bettersmile . The full effect of this medication will take effect after the 3 shoot.

    I am doing much better.

    All of us with urticaria should ask the doctor to explain the benefits that Xolair has on patients.

    I have suffer terribly for 4 years and now I bebelieve I will be urticaria free.

    • nancy35849
      nancy35849 daniela_36294

      Posted

      Hi Daniela,

      i am so happy that the Xolair has made a difference for you after the first shot.  Maybe after the next one the hives will disappear...wouldn't that be nice!  Unfortunately for me, the first shot did absolutely nothing.   I'm scheduled to have the next one in a couple of weeks, but to tell you the truth, I am not looking forward to it.  I am very anxious about the risk of anaphylaxis that is highlighted all over the Xolair pamphlet and drug info.  I really don't want to have an anaphylactic reaction and die or something.  However, there have been nights when the urticaria was so severe and the discomfort so intense, I would take ten shots, anaphylaxis or not, if I was told it would take away those nasty things!  Anyway, glad to know it does work for you, and in time, maybe for me too.  Be well.  Thanks for your reply to my post.

    • daniela_36294
      daniela_36294 nancy35849

      Posted

      Hi Nancy

      I already had 2 shoots. The first did absolutely nothing, the second made some difference .

      The side effects are really rare. Don't worry

      Keep me posted 😃

    • nancy35849
      nancy35849 daniela_36294

      Posted

      OK, that's good to hear.  I will let you know.  Also the allergist said she's never had a patient have a reaction to it.  Still, I'm glad she has me wait for 2 hrs. In the office after receiving the shot, and, I'm happy there are epi-pens.  I know Xolair works by binding IgE, a protein in the immune response, so hopefully it will work for me as it is working for you.  In the meantime, and even afterward, I will continue to practice daily meditation smile
    • pamela51284
      pamela51284 daniela_36294

      Posted

      I am in the process of qualifying for xolair. I have been diagnosed with chronic idiopathic urticaria and chronic angio oedema. I am sensitive to most of the medicines they have treated me with so far. I am nervous about th side effects of xolair, ha e you had any negative experience with the side effects? I know you mention the hives are r ducking, but have you been experiencing anything from the xolair?
    • pamela51284
      pamela51284 nancy35849

      Posted

      I have experienced anaphylaxis 4 times in a short 20 hours about a month ago, and they are hoping xolair will help me. Feeling discouraged as i am unsure what is best to live with, hives or the umpteen side effects of xolair sad

  • michaela99267
    michaela99267 nancy35849

    Posted

    so after 18 months of suffering i finally got seen by a specialist at st thomas hospital in london, you need to be transferred to a dermatologist then i got lucky and the dr was really interested and cared and transferrd me to guys & st thomas hospital in london to cuataneous allergy unit specialist in urticaria and mastocytosis clinic. Dr C. Grattan really cared,listened and he says I have SYMPTOMATIC DERMOGRAPHISM URTICARIA, there are several differnt types. The drs do not know which types we have as they are dr not specialists so thats why they just give us all these different anti histamines etc to try. There are different tablets for the different types of urticaria. Mine was caused from a stressfull time and caused my immune system to produce a fluid that intervenes with my mast cells etc so when i get stressed upset etc it causes my out breaks. so he has now just today put me on different antihistamines for this type of urticaria so fingers crossed it works, i go back in 3 months. i asked for the xolair shots and he said this only licensed for another type of urticaria where you have huge welts which last alday, and not for my type, he said he strongly believes in the shots, so i reckon after more testing this will be available to us sufferers. the drs can keep pumping you with all these different drugs but you need to find out which type of urticaria you have, push to see a urticaria specialist they do exisist. after 2 years mine does seem to be settling down for no apparent reason.
    • JCH187
      JCH187 michaela99267

      Posted

      That's really interesting, I asked my dermatologist about the injection too, he said he'd have to refer me to an urticaria clinic in London (I'm in north Hampshire) and there was a 6 month wait, I wonder if that's the place he meant.. I think mine is stressed related and I do have the huge welts that last all day so perhaps I should push harder for a referral. So if they know about different antihistamines for different types I wonder why that's not common knowledge amongst the dermatologists?
    • nancy35849
      nancy35849 michaela99267

      Posted

      Hi Michaela,

      Glad to hear you are getting some expert care. 18 months is a long time to wait! I am still shocked to hear how many people have chronic urticaria. It's so strange. I do get giant welts, also pressure urticaria at my waist band or bra-line sometimes. Also, the hives last all day, some fade, new ones arrive, old ones remain...my skin always has some hives in between the daily (nightly) terrible flares. Yes, I am aware of the different kinds of hives. The allergist I see is actually doing a study on chronic urticaria. She is quite knowledgeable as far as I can surmise. Today is a pretty good day for me so far. I hope it lasts, though I've had other good days before that were just "teasers", because the hives were back again at night with a vengeance. Thanks for responding to my post. I live in the US. I like that we are connecting about this and supporting one another in this group from across the ocean! Stay well and continued improvement for you.

      Peace,

      Nancy

  • debolite
    debolite nancy35849

    Posted

    Hi Nancy...I feel ya girl...my story is similar but I found something that works.  The itch went away within 1 hour!!...  Hope this helps     EVERYONE READ....THIS WORKS!!!! Hello all, I am new to the site as far as contributing but have been reading posts for a few months now. I have had hives for almost 6 months now and as all of you know, it is worse than horrible. I have been to my GP, Dermatologist, Urgent care twice and 1 trip to ER in search of answers or at least some relief. I have been unable to sleep during this entire thing except for an hour or 2 here and there. Until last night. A few days ago I read a post from "hives and thyroid" about her cocktail which she swears works. Yesterday I go to the Allergist still looking for answers and my main concern I will be off my 5th round of steroids since January, and I know it will come back very strong. After talking a while she changed my antihistamine to Doxepin. Hmmm, that sounds familiar...I went home and read the post again and yes, it is one of the drugs that worked for her. Singular I am already on. Thats 2 of the 3!!! The other is Zantac..over the counter. I picked up a box and went home and made my cocktail....Singulair 10 mg. Doxepin 25mg. and Zantac 150 mg. I KID YOU NOT GUYS...MY ITCHING STOPPED WITHIN AN HOUR. TODAY ALMOST 24 HOURS LATER, STILL NO ITCH!!!! The hives are slowly fading as well but they dont itch!! It seems that the combination of these drugs hits all the H1/H2 receptor sites to stop the histamine from being released into the body. The Zantac hits the receptor site H2 which it seems the other antihistamines do not. Zantac, who knew??? I feel like a new person. What a relief. Talk to your doctors and get these 3 meds!!!!! I will keep you posted on my progress...Now to find the cause of it   .btw...Zantac (ranitidine) was first developed to be a histamine antagonist, hence it's use, along with other antihistamines, for hives. Good luck everyone, I know you are all as desperate as I am
  • TeddyCan
    TeddyCan nancy35849

    Posted

    Be it hives or anything else..in my opinion, when a condition bothers continually, it becomes depressing. Just tell me one thing, are you suffering from stress? Be it severe or trivial, stress often triggers idiopathic urticaria. So I think you are on the right track. Go with meditation and of course consult an immunologist who is specialized in idiopathic urticaria. 

     

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